2008 July | A Deaf Mom Shares Her World

Embracing the Identity of Being Deaf and Hard of Hearing

When I was growing up, I wasn’t comfortable being hard of hearing. I hid my hearing aid under my hair and as soon as I arrived home from school, I tossed it on a ledge. I never touched the hearing aid during the summer. You’d almost never find me asserting myself by telling someone, “I’m hard of hearing, I need you to face me when you talk.” Only among close friends, would I have the courage to say, “What? Repeat that, would ya?”

So what happens when you’re not comfortable being deaf or hard of hearing? You hide it. You do everything possible to “fit in” and “look normal.” You develop an impressive arsenal of social bluffing skills. You nod along in conversation, figure out when to put in a thoughtful, “hmmm,” and ask questions that might lead you to a clue in the topic that is firing back and forth in a group.

When I became deaf at the age of nineteen, I changed in many ways. I learned American Sign Language and discovered many new deaf and hard of hearing friends for the first time in my life. Slowly, I tapered off the bluffing. I learned to take pride in being deaf, to be open about it, to rejoice in this whole journey. I can’t even begin to describe the differences. For one thing, you’d never catch me showing off my hearing aids on public television. Yes, those are my blue earmolds on ABC– aren’t they purty?

I love stories like this one: Social Bluffing, by Katie. In her post, Katie shares:

I have decided to be more honest with myself and with people I don’t know re: my hearing impairment. I’ve decided that it is perfectly OK to tell the cashier, the waitress or whomever I’m speaking to that I have a hearing impairment, and could they please talk slower and speak up for me?

and:

In my experience, I’ve also discovered that when you are honest with people and tell them why they need to repeat what they said or word it differently for you, they are more than accommodating in the request. I am learning to give people more credit than I did in the past, which has allowed me a more positive view of the world.

In her guest post, Katie shares that she recently began this journey of becoming hard of hearing just a few years ago. So taking the action to assert herself is part of the path of learning to become comfortable about being hard of hearing and getting the communication access that is needed. Little by little, confidence comes from taking baby steps and then one day, you find yourself asserting your communication needs with relative ease.

Just the other day, I received this comment sent via the contact me form on this blog. I received permission to share it here:

Hi there Karen

I am Elias and I am 34yo from way down under

All my life i was in denial of my impairment and sort of closed myself from the deaf community. It wasn’t until a personal crisis that forced me to take a deep look inside myself.

I looked up on the internet for inspiration and help and i came across Stephen Hopson and it was what i needed. I was amazed to learn he is a pilot and motiovational speaker. The more i read about his life the more inspired i became. He woke me up so much and realised that I can do more for myself. I realise i finally knew what i wanted to do for myself and the world.

Then i came across your blog and for the past few months i read as many as i can from your blogs. All i can say is wow.

I wish to say a big thank you for showing me that it is okay to be deaf. I found your blog through Stephen
When i decided to check out your blog, i was amazed by your life experiences. Thank you for showing me that it’s okay to be deaf.

I plan to enter the world of Blogging hopefully soon.

Again thank you!

Elias

Thank you, Elias, for sharing your journey with me. I look forward to reading about your venture into the blogging world.

You’re right, Elias, it’s ok to be deaf.

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Kids At Camp–Mom is Partying!

Yes, those are my kids at left. Aren’t they just adorable? I sent them all off to camp this week. Of course, they’re a lot older than they look in the photo.

Last night, the hubby and I broke out the Blackberry wine from St. Julian’s Winery and we watched TV in bed, sipping the fruity stuff.

We didn’t even have to lock the door!

This is the fourth year my kids have gone off to the Lions Camp. It’s only the second time for my youngest son. The Lions Camp is generously funded by the Lions of Illinois Foundation. Every year, my kids look forward to their week at camp. They come home with reams of pictures and stories about their fellow campers. All of the campers are deaf or hard of hearing, and for some of them, it is the first time they’ve used American Sign Language or hung around other deaf and hard of hearing kids.

This is the second full day that I get to blast my John Denver music without someone complaining that it is interferring with their TV program. The second day that I don’t have to order someone to pick up a half-filled glass and an empty wrapper. There’s no one around to holler at. Clean your room! Empty the dishwasher! Take the dog for a walk! Stop body-slamming your brother to the floor!

I have lots of good intentions of getting work done this week. The house also needs a serious cleaning and I’m working on an e-book. I expect my readers to hold me accountable to this. At the end of the week, be sure to ask me if my house is clean and if I’ve written 5,000 words.

However, as much fun as I’m having dancing around the house without someone snickering at me, I realize that this is a taste of life to come. Haven’t I said that before? This house is gonna be too empty without kids.

So, kids, go have fun at camp this week and Mom is gonna do the same. But when you come back on Saturday, it’ll be back to the grind!

”Hang up your wet towel! How many times do I have to tell you that the maid doesn’t live here?”

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Thinking of Breaking Up? You Might Get Sued

I was chatting with a friend this morning and she asked, “Did you hear about the lady who sued her fiance for dumping her and won $150,000?”

Holy Moly!

I went on to read another news article about it:

Jilted Bride Awarded $150,000 after Wedding Called Off

Jilted Bride Calls $150,000 Settlement ‘Justice’

I have mixed feelings about this lawsuit. On one hand, life is messy. Feelings change. Relationships can change from one day to the next. People get cold feet about marriage all the time. Does this lawsuit now mean that jilted others can sue left and right for “breaches of promises?”

The gal’s attorney, Linda Sartain, believes the case will change the way people look at engagements:

Sartain also told Vieira that she hopes the case sets a precedent that an engagement can be a binding contract: “When you give your word to do something and you cause people to rely on it to their detriment, then you may be held accountable for any damages that you cause.”

However, on the other hand, I can understand the gal’s reason for the lawsuit– she gave up her life and moved to be near her fiance–and gave up a job with a nice income. In the article, she says that her fiance never intended to marry her.

Now this makes me think of a guy that I know who plays with people’s feelings on the internet all the time. He makes up all kinds of stories, telling women that he loves them and wants to marry them. He leads them to believe that he’s very sincere and he plays with several women at the same time.

So if this gal’s pal is like the sneaky guy I know–then I’d say she deserves even more money from the guy.

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Are You Enjoying Your Summer?

It was like old times. We invited two families to join us at Christie Lake over the weekend. Dennis, Laura, Steve and Joanne. Plus their kids. It was the first time we all kicked back together up at the lake. The weather forecast called for rain the entire weekend but none of us cared. We just wanted to connect with one another and catch up on life.

Visiting St. Julian's Winery

It definitely rained. We decided to go to the St. Julian Winery in the morning. We left Dennis behind with the kids, and they took off in the rain to go swimming. I hadn’t been to the winery since I was a kid, sipping grape juice at the bar. It was fun to sample the wine and try unusual ones. We ended up buying a blackberry wine and the Niagara.

After the sampling, we took a tour of the winery. The tour guide slowed down his speech and faced us while he spoke, so the tour was pretty accessible for us. Unfortunately, the short movie in the beginning wasn’t captioned.

When we arrived back, the rain slowed down. We grabbed lunch and then decided to go tubing with just the adults first. The kids were taking a break from all the swimming they did.

As I whipped Dennis and Steve around, I tried to make sure that Steve didn’t fall off too hard or crash his head into Dennis. I didn’t want to jar his cochlear implant internally and be responsible for sending him back into the hospital for a re-implant. When Steve climbed into the boat, he thanked me for the wild ride. “That was me being cautious!” I laughed.

Steve brought up his kayaks so we all took turns kayaking around the lake. On Sunday, the sun came out in the afternoon so we took the pontoon out and swam in the middle. We took the kids tubing and kneeboarding the rest of the time.

This was a rare weekend for all of us together but I was really thankful for it. There’s nothing like spending some time with friends and family, sharing good food and good times.

So how’s your summer going? Are you finding enjoyable moments to kick back and enjoy? Share them in the comment section!

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Deaf Mom World Gets a New Look–Makes Alltop

How do you like my new look?

No, I didn’t get another dye job.

Gaze your eyes upward and you’ll find my new banner design. I won the banner design from Meryl Evans, who was giving away five grand in prizes to celebrate her blog’s eighth birthday. I can’t wait to see what she gives away at her tenth birthday!

The banner was designed by Harry, the talented designer from Men with Pens. When I first received notification that I won a banner design, I was thanking the stars for aligning in my favor. One of the things I wanted to do after the SOBCono8 was to customize my theme, but being the ultimate procrastinator, I kept putting off the search for a designer. Lo and behold, I now had one at my beck and call.

It sure was fun working with Harry. Harry, do this. Harry, can you try that? Harry, can you make it darker? Harry, can you airbrush 40 pounds off and make me look like Christie Brinkley?

We had a little problem with geography and I ended up first in Canada, then in Michigan. Harry was working off the logo I created all by myself, from scratch at the left. Considering I spend half of my summers at Christie Lake in Michigan, I thought about leaving it there. But it was too much fun to order Harry to make more changes. So Harry’s slaving away and moving me to Chicago soon.

Harry also went above and beyond duty as he helped me install the banner on my blog. We worked through instant messaging and I asked him to walk me through the whole process. He could have easily installed it himself, but he was willing to take the time and guide me by the hand. Navigating the code was like walking through a minefield, and Harry kept me from blowing my blog up.

Would I pay money to have this done by Men with Pens? You betcha.

In other news, A Deaf Mom Shares Her World made it to the very top of Alltop in the Disability section. I’ve been quoted in Car and Caboodle and Diversity, Inc. recently. And the most exciting news of all: I’ve been asked to become a regular blogger for Momlogic and Chicago Moms Blog.

But if you’ll excuse me, I’ve got to run. I wish I was jetting off to an exciting blog conference or hosting a book signing, but there’s something more urgent to take care of.

The toilet’s clogged up.

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Steak ‘n Shake — Filing a Complaint for Discrimination

It was bound to happen.

For the last two days, friends have been sending me the news articles about Karen Tumeh, a deaf woman from Nebraska who is suing the McDonald’s corporation for refusing to provide access in the drive thru.

Sounds familiar, doesn’t it? Back in January, my son and I had the drive thru window closed in our face, not once, but twice by a head trainer/manager of Steak ‘n Shake in Bolingbrook. “Go around and use the speaker,” I was told. Numerous attempts to explain that I was deaf did not sway him. Showing my hearing aids didn’t convince him to serve me. He stated that he could call the cops if I continued to remain in the drive thru.

Many people told me to “sue the pants off of Steak ‘n Shake!”

I wanted something more. I wanted to work with the corporation to try and affect some positive changes. I didn’t want to pursue a lawsuit. I wanted to make it so that when my kids go through a Steak ‘n Shake drive-thru, they’d be able to access it in any of their 400+ restaurants.

A meeting was set up with three Steak ‘n Shake employees: the Director of Communications, Director of Human Resources and Director of Operations. Howard Rosenblum, a deaf attorney from Equip for Equality and a person who was very familiar with the drive thru issues, joined us at the meeting. He was there to represent me and make sure that all of the bases were covered in protecting my rights.

At first, the possibility of change seemed quite possible. The three corporate staff persons were interested in making positive changes so that this would not happen to another deaf, hard of hearing or speech-challenged person in their drive-thrus. They indicated that they were not the right department to implement the changes and that we would have to meet with other staff who could put changes in place. So we left the meeting feeling positive about the direction that Steak ‘n Shake was going in.

The issue was handed over to Greg Fehribach, an attorney who works for Steak ‘n Shake. We stressed to Mr. Fehribach that we wanted to meet with the corporate employees who had the authority to make changes in the drive thru.

On Monday, Howard and I met with Mr. Fehribach and another Steak ‘n Shake attorney. Despite my request to meet near my home, Mr. Fehribach insisted on having the meeting in downtown Chicago. Right then and there, I could see that Steak ‘n Shake wasn’t planning to make this process any easier on me.

At first, our meeting went well as we explained the changes that we hoped to see at Steak ‘n Shake. After the incident in January, I did a lot of research about drive-thrus and experienced several different access options. A Subway in Indiana had a touch-screen menu so I was able to experience what it would be like to use a touch-screen. I visited the Culver’s restaurants that had the Order Assist system in place. I met with the owner of Order Assist and suggested some modifications to the system to make it more accessible.

Imagine the wonderful PR that would result from making a positive change to all of the restaurants and making the drive-thrus accessible, I said.

We quickly learned that the attorneys for Steak ‘n Shake had no interest in pursuing any changes to the Steak ‘n Shake drive-thrus that would require a physical change to the system. They believed that training their employees and providing pre-printed menus would be enough. Neither attorney had even made an attempt to explore the systems that were in use. They were not going to bring about a meeting with the corporate executives who could implement those changes. It was pretty apparent that they wanted me to settle it, not blog about it anymore and make it all go away.

The attorneys brought in the head trainer/manager who discriminated against me. He stiffly issued a canned apology and then left the room. The attorneys would not allow me to say a word or ask questions. After the apology, I got up and left the room. All the emotions of that January day came flooding back– to be denied service because you are deaf in this day and age means that we have so much more work ahead of us to obtain equal access.

So I’ll be joining Karen Tumeh in filing a complaint against a corporation for discrimination in the drive-thru. For the last six months, I explored this issue and tried to affect some positive changes in drive-thru access. I really hoped that Steak ‘n Shake was going to be a leader in this.

It’s just a shame that the corporations don’t want our business.

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We Are Indeed, Hands & Voices

Every year, it gets better.

Beth Donofrio and I headed out to Breckenridge last Thursday for the annual Hands & Voices Leadership Workshop. Beth is a close friend of mine as well as an Illinois Hands & Voices board member. She’s a mom of five kids, with lots of experience in assisting parents of deaf and hard of hearing kids throughout the years.

Each year, the workshop has grown, and this year, we had folks from as far away as Saipan joining us. On the left, you can see the states that are involved with Hands & Voices. We are spreading wordwide as well. It has been amazing to see the growth– from a few chapters a few years ago to nearly every state with a chapter or a start-up. There are a lot of us out there who believe “What works for your child is what makes the choice right.”

On Friday night, I teamed up with Erin, a mom from the Pennsylvania chapter to host an icebreaker. You’ve heard of “speed dating?” We did “Speed Greeting.” Everyone left with a new best friend that night.

There were several of us there raising three deaf/hard of hearing kids and it was nice to bond with those families. Everywhere I went, moms would share bits and pieces from their lives, wisdom was exchanged and ideas explored. I wanted more time– there’s never enough time! The weekend went by way too quickly.

In the photo on the left, is our team from Illinois. Left to right: Leeanne Seaver, Executive Director of Hands & Voices, Beth Donofrio, myelf and Ginger Mullen, the EHDI Coordinator for newborn hearing screening. We are working together to set up a parent-to-parent program in Illinois that will provide parent support after a diagnosis.

Someone asked me once, why does Hands & Voices appeal to me so much? From the time I first set eyes on their mission and their stance on communication modes, I knew I had found my “home.” I wanted a safe place to explore answers for my kids, a place where I could learn advocacy skills and a place that was going to roll up the sleeves and help me make changes in the way that families receive information upon diagnosis. I love the variety– I’ve had a wonderful opportunity to meet families using all kinds of communication modes.

I came across a quote over the weekend that I thought was really profound:

“A community that excludes even one of its members is not a community at all.” –Dan Wilkins

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Hands & Voices in Colorado

Greetings from beautiful Colorado! I am blogging this on my phone at the base of Breckenridge’s Beaver Run resort. The mountains are amazing at this time of the year. Many of the peaks still have snow on them.

I came out here on Thursday with my friend Beth who is also a board member for Illinois Hands &Voices. We attended the annual leadership workshop for Hands & Voices.

I’ll be sharing pictures in tomorrow’s post. It was an amazing weekend of connections & new friendships.

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Socialization for Deaf and Hard of Hearing Kids

As I was driving home from the mall today, I watched the six kids in the back as they chatted with each other. The two high school boys were conversing using mostly their voice, with some signs thrown in. The three girls were animatedly using American Sign Language. Eyebrows arched, shoulders shrugged and cheeks puffed as they skipped through conversations about residental school, camp and their plans for the night.

I thought back to a few months ago: I was at an anniversary celebration of a close friend and she introduced me to her cousin, a mom of a hard of hearing son who was in middle school. We chatted for a while, I told her about Illinois Hands & Voices and we talked about IEPs. Then the topic of socialization came up. I shared my frustrations about our school district–how there were nearly 70 kids with hearing loss and very little connection among the kids. What she told me next blew me away. “My son doesn’t have a single friend,” she said. I saw sadness on her face. “If he could just make one friend, it would be so much better.”

I couldn’t get that boy out of my mind. I grew up being the only hard of hearing kid in school, but I always had several close friends. I’m always looking for new situations for my kids to meet and connect with other kids, deaf, hard of hearing or hearing. So when my oldest son received an invitation to swim at a friend’s house a few weeks ago, I drove him over there.

I chatted with the mom and we talked about school, IEPs and other things. What she said next, blew me away. The mom revealed that it was the first time since they moved three years ago that her sons had friends over to their house. I watched as the group of kids horsed around in the pool with smiles on their faces. It was hard to believe that this was the first time a group of them had gotten together.

So today, as I watched the six kids connect with one another, I started to wonder about other deaf and hard of hearing kids and how they’re spending their summer. How many other kids are spending their summer social bluffing their way through group conversations, as I did? I had a great group of friends while growing up, but I still managed to be the Social Bluffing Queen when it came to parties and group outings. I didn’t address the social bluffing issue until many years later– after meeting deaf and hard of hearing people and learning what it was like to access group conversations without bluffing through them. Mark Drolsbaugh, my separated-at-birth-twin has a great series on social bluffing:

Super Phony

Super Phony on Spring Break

The Return of Super Phony

What will it take, asks Mark, to hang up the Super Phony cape for once and for all? “There are still too many Super Phonies flying around out there. We’ve got to rein them in and encourage them to live authentic lives,” says Mark.

Can it be done?

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A Week to Remember at Christie Lake

Vacation time is over and a mound of laundry is sitting in the laundry tub. I can hear my Mom chiding me as she reads this. But I told you to wash your laundry while you were up there!

The week started out with Steven’s baseball team’s championship win. No sooner did we arrive back up in Michigan and the storm clouds began to roll in. We covered up the boats just before the skies let loose with angry mix of wind and rain. The electric went out from Wednesday evening until Friday morning.

Everyone made the best of it. Shortly after we lit up the lanterns, the kids began to make up dances in the kitchen. Mom and my cousin, Marilyn, began doing line dances, the fox trot and the cha-cha (at least, I think that’s what the hopping around looked like).

On the fourth of July, the weather was beautiful. The kids decorated the pontoon for the annual boat parade. We didn’t have many boats this year–either the price of gas kept everyone on shore or they didn’t want to particpate in the water fights afterwards.

Right after the parade, we threw a surprise 40th birthday party for my cousin Cheri. Cheri’s brother passed away when she was a teen, so her actual birthday at the end of the year always holds sad memories. So we celebrated her “half” birthday instead. The cake was decorated in black icing, with two nice mounds of icing-covered oranges in honor of her new growth. That’s right, Cheri’s gift to herself this year was never-before-seen cleavage. I gotta tell ya, my cousin rocks. She took up running, lost weight and looks like a knock-out. She’s my inspiration. I’ve got the boobs, now I want the body to match.

There’s more. The vacation wouldn’t be memorable if it wasn’t for the way it started… and ended. On Saturday night, we were next door at a party. The beer was flowing freely and the roasted pig was actually delicious, even after I declared that I wouldn’t eat it–there I was–sitting with a plate of it and downing it with my fourth cup of beer. Those who know me, you can pick your jaw up off the floor. Yes, I do like to imbibe every now and then.

Cheri’s husband came bounding over. “The septic tank just overflowed on the driveway,” he announced. Uh oh. So that smell– it was wafting over from our driveway. We tried to keep the news away from Mom as Dad slipped back home to call the septic company. Of course, there wasn’t anyone who was willing to come out over the weekend and empty the tank.

So there we were, with a bunch of people in the house and strict orders not to flush. Mom hollered at Dad for a bit. “I told you to call the septic company earlier in the week!” But then she quickly went into problem-solving mode, pulling out kitchen garbage bags and announcing that anyone who wanted to void themselves of solid contents would have to cover the toilet with a garbage bag first. We managed to get everyone through the weekend minus working toilets.

What can I say? It was definitely a memorable week.